looking back {can be a good thing}

Tonight I went back in time - 2008 to be exact - and read some old posts I'd written at the beginning of this journey, including my very first post. 


Bittersweet. 


As tears welled (and continue to well) up in my eyes, my heart skipped a beat and my stomach turned as I was brought back to the fear, the unknowns, the grief. And as much as one would think I wouldn't want to go back to these days, how can I not. To me, they are the.most.important days to take it all in, to grieve, to be scared, to do whatever it is that one has to do to move on. Because it's the moving on part when things start to happen; and when things start to happen, it's when you can look back and realize how those fears truly do become simply amazing moments as you watch your deaf/hoh child learn to listen and then speak.


truly - simply.amazing.


and as I read my second post, these words stuck with me,

"Throughout my dad's dementia battle and taking care of him, I prayed for strength and God presented me with many obstacles, but I made it through. Was He preparing me for this? I'm guessing He believes I'm strong enough to take on Aiden's disability, and I will, head on, full force, and without a doubt, will be his strongest advocate; all while providing him with an atmosphere that he will always know how loved and special he is! I was meant to be Aiden's mommy and we will get through this - STEP BY STEP, DAY BY DAY."

I remember many days when I felt everything BUT strong; how I wanted to crawl back in bed and make it all go away, days I didn't want it to be my "new normal". 


then a glimpse of today: 

• {drama} "Mommy, mommy, mommy (insert fake cry), mommy, mommy the remote! (insert more fake crying) Where the remote mommy? Mommy help me. Mommy, mommy ..."
• {tattling} "Mom, mom, mom, MOM! Kailyn not give it me! KAILYN give it me! You have share Kailyn!"
• {hearing} "You hear that mommy? What's that mommy? I hear sound. What's that sound?" (and I have to listen extra hard to hear what he's hearing and think it's oh.so.cute how he still points to his ear like I taught him to do way before he was even a year old)
• {loves to hear} "Mom, mom! My CI! My CI falling off my ear! Help me mom." 
• {love.} "Yay! Daddy's home work!" (as he hears the front door open)
• {hide-n-seek} "I found you! You count now mom, I hide." 
• {LoVe} "I love you mommy! Gimme hug and kiss!"
• {tripleLOVE} "C'mon mommy, snuggle, snuggle." (as I try to get him into his bed)

and it's these simply.amazing.EVERYDAY.moments like these that I realize, I am strong enough now and I WAS strong enough then. This is by far a fly by night journey. Day by day, step by step has become our journey's motto ... and we still have a lot of work ahead of us. But because of this amazing technology, TONS of hard work, dedication, STRENGTH (through multiple avenues - mainly, CI/hoh parent support community), and unlimited HOPE, my profoundly deaf child is listening and speaking.

I recently received a message from another mom who is just starting this journey. She told me Aiden's story provided her hope. I cried. She made my day. This is what inspired me to go back and read some of my first posts. To go back and relive. I've been ecstatic about Aiden's recent progress, but have still had this piece of worry lingering in my mind. Going back and reading helped me realize just how far WE have ALL come, how much we all have grown. So THANK YOU. I needed these bittersweet tears, because sometimes, it is good to go back and remember. 


One of the first things that helped me in this journey was when our very first AVT, Dr. Morrison, gave me the following poem. I like to share it with others starting this journey as I think it's so important to know that it's ok to grieve, okay to be mad, but to also know in your heart, as you learn, as you grow, as you take those day by day steps, that the day will come when you can take a deep breath and smile. Just breathe. and smile. Because it will never be what you imagined and I promise, you'll be so glad you were the one chosen to experience it all ...

"God chose us to be Aiden's parents. How lucky are we."

and you wouldn't change a thing in the world ... because it truly is an AMAZING journey.

-------------------------

Welcome to Holland

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

whenever I doubted myself

and decisions to be made,

your grandpa  always told me

three.simple.words-

"FOLLOW YOUR HEART"

{exciting} changes are in the works.

more to come soon ...

My Sidekick

How do you go from this,

to this,

to this

in what seems like overnight.

In the blink of an eye, my binky baby has turned into a little boy,

and it makes my eyes water.

This week Aiden had therapy with our Regional Infant Hearing Program advisor, who happens to office out of the elementary school that houses the hearing impaired program for preschool and kindergarten. This program is also an option for us to try and send Aiden to, as long as our school district agrees. Instead of therapy though, his therapist and I talked while Aiden played.

Aiden turns three on St. Patty's Day. What does that mean besides the fact that my BABY is growing up WAY too fast?

It means that he will no longer receive Early Intervention services through our county (which pays for his PT, OT, one of his speech therapies, and provides extra funds for community classes such as the music therapy class he's taking at the time).

It means we have scheduled a multi-factored evaluation (MFE), in order to determine if Aiden is eligible for public school special needs preschool (in which we have multiple options of preschools the district MAY agree to send him to that we've been visiting).

It means transitioning from an IFSP (Individualized FAMILY Service Plan) to an IEP (Individualized EDUCATION Plan).

It means Aiden will be under someone else's wing learning language and socialization skills, making friends, having fun, and carrying his "bapac" (backpack) and "uhnba" (lunchbox),

and as excited as I am to think about the benefits he'll receive at whichever preschool setting we choose, and all the fun he's going to have at "sool", and how much language he'll learn, and how much he'll grow all around ...

it all also means I'm just not ready to let my baby go.

It means every time I think about it, my eyes water.

It means that I need to put on my big girl panties and know it's time to let go and let him come out from under momma's wing and gain the independence he is OH SO ready for.

I had no problem sending my older two. None. Nada. Nilch. I don't even think I got tears (not until I saw my oldest walk out the door to middle school).

but now, every time I think about it, I get teary eyed.

So I talked to my therapist, I mean my sister-in-law, and she brought up some very good points.

As many know, barely two months before Aiden was born my dad died from a long, yet fairly quick bout of dementia. He was 55 and way too young. I knew something was wrong with him and worried about him as we tried to figure things out going from doctor to doctor for a good four plus years, took him into my home (on and off) the last two years, and then ran from assisted living to hospitals to nursing homes the last four months. It wasn't easy. At all. I fought (and worked) with doctors, nursing homes, nurses, insurance agencies, and psychologists. I took care of him the best I could. He was my sidekick.

Then two months later Aiden was born. I remember telling my dad the summer I found out I was pregnant. He did a happy dance around the living room. Four months later, he'd make mention of "the baby" but didn't really get it. Three months later, he was gone. I knew Aiden was going to be my strength to carry on. What I didn't know was all I had ahead of me and how much advocating for my dad made me a stronger person and better able to deal with the advocating which was yet to come.

and that's exactly what I've been doing for nearly the last three years. Making sure my deaf son receives the best medical/hearing teams possible to provide him the chance to hear and a life of listening and spoken language; running from audiology appointments all over the state every two to four weeks for nearly a year until his maps are finally right; getting second opinions when that mom instinct kicks in and knows something still isn't right even though "the professionals" say everything is fine; running to therapy after therapy appointment; talking, talking, talking about every.little.thing in order to provide a language rich environment and making EVERYTHING (yes, everything) we do an "experience" to soak his brain with nouns, adjectives, verbs, prepositions, etc. to TEACH him (over and over and over again) something that would seem so simple and that any typical hearing child learns through incidental listening.

For nearly the past three years, it's been him and I,

He's become my sidekick.

Learning, growing, experiencing,

EVERYTHING

TOGETHER.

and honestly, I'm scared. The one person who filled my dad's void is growing up. It's not that he doesn't need me anymore, but more the fact that someone else will be teaching him besides me. I didn't have this problem when he went to The River School in DC, but that was more like the ultimate mommy's day out two times a week. I know I could wait and keep him home another year, but again, I know preschool is the best option for him and believe me, as ready as I seem not to be, I am willing myself to be, because I know how much he'll benefit and how much fun he'll have.

But deep down inside, my stomach knots up and I get a lump in my throat with the thought about not having my sidekick, day in and day out, who means the world to me to take care of and play with and teach and love on all day long.

But I'm sure, deep down inside, there's a part of me who will learn to enjoy

the time away from each other and the tears won't last long.

and maybe, just maybe, I'll be able to fill that void,

and take this long overdue time alone to find myself

and rediscover who I am, as my own person,

without a sidekick.

In Loving Memory

I can't believe it's been two years today
since I had to say goodbye to my dad after a long battle with dementia.
Being his main caregiver, it was very hard after his passing to get past the struggles he had and to remember him Pre-horrible-disease.

It gets a little easier, bit by bit, as time passes. Most of my dreams of him have been with him sick, but last night, he was well ...
he was "my dad" ... it was good.

So here's to you dad and to remembering ...

how you pushed your first grandbaby in the "hospital bassinet"
all over the hospital, then went on a mission to buy one
because Ryan "loved it so much and needed one at home".

how much you LOVED Christmas and handing out the presents, one by one.

how you tickled us as kids until we screamed out with laughter, "I love you dad!"

how your grandkids automatically knew the answer to your question, "Who's the man?" and would run away laughing knowing they were about to be tickled.

how you always said to us kids, "watch this" with a sly smile on your face as you yelled for mom, "Hey Red", knowing how much it got her goat.

how you loved music and always sang out loud as you played the drums on anything in sight. I hear songs still today and can hear you belting it out.

how you wrote your own poem to us in every card you gave.

how you always made us give you a kiss before we went ANYWHERE ... even if it was just down the road to the store, and always said, "Be careful, I love you" before we left. OR even better ...

how you made me call you when I got "there" - each.and.every.time I went out of town - even when I was in my 30's.

how dedicated you were to your "men", your country, and how you loved being a soldier and leading your troops.

how you taught me to play poker by the time I was three ... you said it was for my math skills, I think it was so you could practice. ; )

how you threatened every guy I dated, calmly telling them how you had guns and weren't afraid to use them.

oh how you loved your grandkids ... your Partner and your KK ... they became your life and you were there's ... and I know you're laughing in Heaven as you watch Aiden from above, as he's hell on wheels and I can just hear you chuckling as you say, "Paybacks are hell", even though I was the good child.

how even when I was married and lived at home while my husband was in Korea, I still had a curfew earlier than my brother, who was in high school, and you'd wait up until I got home.

how you danced - being silly or not ... I remember this throughout my life ... as a kid, as a teenager, as a mother. and what a dancer you were. you always said you had a little "bro" in you (from your last name).

how when I drove up with my new boyfriend (and now husband) as you were outside mowing the "back 40" in a SPEEDO and 1970 like HEADPHONES. You said you were getting a tan.

how when mom and I had to head up to see grandpa right after Christmas you were nice enough to water the plants, even though they were fake.

how when we got home from that same trip you complained what a bitch it was to take down the Christmas tree. What you didn't realize was that all you had to do was fold the limbs up, not pull each.and.every.one out one by one with pliers. Ya, the fake tree was now dead.

and one of my favorites,
how you would ALWAYS say,
"I can't wait for tomorrow."
Me (or anyone), "Why?"
"Because I get better looking everyday!"
and we'd fall for it each.and.every.time.

IN LOVING MEMORY

I miss you dearly dad.

4/18/52 - 1/24/2008

Forever Thankful

I have been thinking of all I am thankful for, for quite some time. And I am thankful for SO much. But I can't help but think of this time last year. I look back and I was 6 months pregnant, taking care of my father, who at the young age of 55, had severe dementia, neither of us having any clue of what was to come. All I knew and cared about at that time was that my daddy was dying. It was hard to even fathom a new little life growing inside of me.

My daddy passed away that January. Just two months shy of when his third grandbaby was born. My dad and I put up a good fight. We fought hard for his health, for his care, for who he was. After he died, it was still so hard to enjoy any pregnancy I had left. I wanted him to know this baby inside me, I wanted him to hold his grandbaby, and love him as much as he did my other two. I wanted this baby to know the awesome grandpa that he was and it tore me up to think he never would.



I'm struggling this holiday, HARD, but I know deep inside that I am most thankful for what I learned from my dad throughout my life as well as on my dad's journey and how it has helped me tremendously with my journey in raising a deaf baby.


I am thankful my dad taught me to never give up. To always give it 100 percent no matter if I was managing a whole corporation or scrubbing a bathroom floor. If it was something that needed to get done, it better be done damn well!


I am thankful for my dad telling me he loved me EVERY SINGLE DAY. EVERY TIME HE SAW ME. ALWAYS. In fact, I found this on my cell phone just a few months AFTER he passed away, and the DAY AFTER having this horrible, good for nothing bad day that every mom of a deaf baby should and can have. We deserve it. and guess what ... IT'S OKAY TO HAVE THESE!


I am thankful for the perseverance and endurance and hard headedness that my dad instilled in me (well, my mom actually had a lot to do with this too *smile*). If it wasn't for him, I would've believed it when they told me my baby wouldn't benefit from hearing aids, but "to wear them anyway". But I didn't ... because I knew we would overcome. AND WE DID ... here, and here, and here and HERE.


I am thankful for the fact that my father taught me that doing good, wasn't "good" enough. He taught me to go above and beyond. To not only be good, but to be GREAT. And because of this, I found this person, and this person, and this person to become part of our "A" team for Aiden, a team I knew had the gumption I had. They are the main reason we are where we are today (I am still in the process of writing up a HUGE thank you to our Texas team ... they are and will always be the ONES I will never forget!). AND to this day, I continue to research EVERYTHING and ANYTHING to do with deafness, and this TEAM continues to feed me!


I am thankful for my dad's laughter and sense of humor. As a kid, I remember my dad being gone a lot because of the military, but one thing I remember even more, is my dad's smile and always making people laugh. He was always the comedian ... people loved my father. Up until his last days, he would still give us all a funny look, just to make us laugh. It is so important to smile and keep faith and happiness in your heart through any hard time, it just makes it that much easier.

So thank you dad, for all you have taught me, throughout my life, but even more so, in our last year together. You trusted me and continued to love me when I hated myself for what I had to do to take care of you. You didn't give up ... just as you always taught me. You continued to have faith in me when I had no faith in myself to take the necessary steps to take care of you. You smiled at me every time I came to see you when all I wanted to do was crawl in your lap and cry ... and no matter what, you always told me you loved me and to take care of your grand babies. I am dad ... I am, and because of all you have taught me, I am thankful!

What Makes Us Weaker ...

actually makes us stronger. Everything really needs to be day by day and step by step. I sit here tonight thinking about all of the change that has happened in my life in the past year ... and how this has been such an influence on me being a mother to a deaf baby.

My dad, at age of 55, passed away this past January of dementia. Doesn't make sense at such a young age does it?!? Tell me about it. He was the father who called if he saw a storm coming towards the city I lived in, to make sure I made it safely to whatever destination I was flying to, to tell me he loved me everytime I walked out the door ... even if it was just to run up to Walmart!

I took care of my dad for two years with this disease. I watched him deteriorate. I watched him become a person I didn't know. I watched him go from a strong, outgoing, fun loving person to a paranoid, weak, not to sure of who he was OR who I was. I watched my dad die. It was the hardest thing I've ever had to deal with, or so I thought at the time.

Three months later, Aiden was born and failed his newborn hearing screenings. This was just as devastating to me. How could this happen? After all I had just been through, after all I had just done for my father, how could God let my baby be deaf??? And I questioned and I questioned and I questioned. I didn't understand it. I felt like I had been through enough. I felt lost. I knew I helped my father as much as I could, but at the time, I had NO CLUE how to help my precious baby boy!

Now I understand. I needed Aiden as much as he needed me. I was taught such a powerful lesson with dealing with my father's death, that I needed to empower that lesson in raising Aiden. That lesson being - life is too short to live in fear, life is too short to not do something to make a difference, life is too short to stand down and not speak up for what you believe in. I learned to voice what I felt to protect my father and now Aiden, I learned to stick up for what I believe in, I learned to truly follow my heart and know IT will lead the way.

It's still very scary though. How will his peers treat him, how will he adapt to hearing, how will I be strong for him on the days he is so sad and I just want to take all his pain away. And there are so many choices to make for him, as his parent ... bilateral implants, simultaneous implants, communication approaches, do we teach him sign, making sure he gets the right therapy(ies). Such different choices than I had to make before, but just as difficult. These are times I would call my dad just to "talk through" my choices, and he would offer (give) his opinion (very strongly) and I would listen. And then he'd call back with another thought, and then another, and another (I love you dad). My dad always wanted to make sure I was okay ... and that his grand babies were okay. His grandkids were his life. By now, my dad would have every DVD on sign language, have signed up for courses, looked at anything to buy off of TV or in ads on hearing loss, anything to do with hearing loss or deafness, he'd have and be ready. When it came to his family, especially his grandkids, no one could stop him, they were his life.

I still wonder everyday if I made the right decisions for my dad and if I make the right decisions for Aiden. But I have to believe in what I've done and what I do. I miss my dad terribly ... I get teary eyed thinking about him many times throughout everyday. Yet I feel a tremendous peace about me that God has given me this special child for a reason. I'm not sure exactly what that reason is yet, but I know I have learned so much more from Aiden and that I will do everything in my power to help him be the person he is meant to be plus some!

Reminding Myself ...

that everything has to be day by day and step by step. It's been a rough week ... not so much with Aiden, but more so with the loss of my father. I am having a harder time with his loss lately than with Aiden's hearing loss.

When I first learned of Aiden's hearing loss, I didn't think I'd ever heal from it. It knocked me down and I didn't think I'd be able to pick myself back up. I felt lost, I felt scared, REAL scared. I cried and cried. I didn't think I'd make it through. Then I read and I researched and I talked to people and I realized everything was going to be okay ... that my baby was going to be just fine and we would adjust to whatever we needed to; we would learn whatever we needed to learn; we would do whatever we needed to do to make the best life for him.

And we are doing all of this and more, but I miss my dad, I miss him being a part of such a HUGE period in my life. He lived for his grandkids - he loved his babies. I often imagine what he'd been like with Aiden. He would have mourned with us, but would of had that take take charge attitude of "this is who Aiden is and we will love him for who he is and do what it takes to get through this." My dad would already have every DVD on sign language, have signed up for courses, looked at anything to buy off of tv or in ads on hearing loss, anything to do with hearing loss, he'd be ready. When it came to his family, especially his grandkids, noone could stop him, they were his life.

I've never lost someone like this before ... especially someone I took care of. I think that's the hardest part

I thank God everyday for my baby boy and his brother & sister, I thank God everyday for my life, I thank God everyday for

HAPPY FATHER'S DAY!

My house is quiet this morning ... Aiden's back asleep for his morning nap, Mike's still sleeping (after a night of pig hunting with the guys), and so is everyone else! This is actually a treat to me as I have time to sit and reflect about the two important men in my life ... my husband and my dad.

My husband is an amazing father! I just smile when I watch him interact with our kids - each one in their own special way...

I watch him with Ryan - joking around, roughing him up, playing video games together, taking him hunting, coaching him not only in baseball, but about growing up and becoming a good man, coaching him about LIFE.

With Kailyn, he's so gentle, treating her like a princess, holding her hand, taking time to do things girls like to do, involving her with the "boy" things too, taking her to daddy-daughter dances, and teaching her now how a man should always treat a lady. She is definitely daddy's little girl.

Then there's Aiden, just three months, and I'm reminded all over again why I married this man. The way he holds him, talks to him, changes him, bathes him, is involved with him, everyday, every moment he gets. My favorite is seeing all six feet of him sleeping with this tiny little bundle on his chest. How peaceful. How precious.

And me ... I see how he believes in me, in our family, in our life. He reminds me everyday how Aiden will be okay, how we will learn together, how we will get through it, day by day. He is my strength. My best friend. My partner. My therapist ; ). My everything. Happy Father's Day baby.



-------------------------------------------------------------------------------------------------This is also the first Father's Day since my dad passed away in January. I think about him today and I want to cry, but instead I smile. He's still with me and so are all of the things he taught me that help me through this journey...

"Always give it your all, no matter what you're doing ..."

"Follow your heart ... follow your heart ... follow your heart"

Throughout this time, I think of my dad and I remember his words. This is not going to be a smooth easy ride, I'm going to make mistakes, I'm going to have those days. All I can do though is follow my heart with all the decisions that have to be made and give it my all, and I know as I go forth on this journey, I'll be able to look back and feel good about it, and today I know it will all be okay ...

A Message From Above

Thank you all for your encouraging messages to help me through my "bad day"! It is nice to know that you all agree, IT IS OKAY TO HAVE A BAD DAY!

The most encouraging message came last night though. This is crazy and I think the Lord knew I needed to hear this. I was lying in bed trying to get Aiden to sleep and for some reason opened my cell phone ... it said "voice record". I thought "voice record? hmmm..." Then I saw there was a recording - Nov. 20, 2007 and I pressed play. I couldn't hear it too well and figured I'd hear Kailyn being silly, but then I made it out - it was my dad and me - a quick 10 second conversation, "Hi dad.", "Hi. Love you." "I love you too dad." CLICK. That's it. I had chills. I listened to it over and over - I was hearing my dad's voice telling me he loves me!! Tears just fell! He used to call me everyday just to tell me he loved me and now I can still listen to it everyday. He wanted to remind me he's here with me at a time I needed it most! I LOVE YOU DAD AND MISS YOU SO MUCH! THANKS FOR YOUR MESSAGE!